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Saturday, 28 April 2012

April Roundup

2012 seems
to be flying by - April is already drawing to a close and soon summer will be
upon us. Of course here in England that just means the weather switching
sporadically from raining so hard it feels like the ocean is trying to climb onto
the land, to irradiating levels of sunshine so intense a hydrogen bomb would
seem like an air conditioner.

But I
digress, on a more relevant note you’ll be glad to hear that, even though
endometriosis awareness month has come and gone, research into the disease is
still carrying on apace. There hasn’t really been any one big piece of news
that has caught my attention this month, so instead I’ll do a rundown of all
the little bits of endometriosis research, from diagnosis to treatment, that
have been published recently.

To start
with; getting diagnosis. In order to get diagnosed, you first have to go see
your local doctor, an activity many women with endometriosis will know does not
always go well. So firstly, a report from France about
how much knowledge general practitioners have about endometriosis diagnosis and
care. To test this, the study gave a 36 item questionnaire to 100 doctors from
a region of upper Normandy. The survey found that 63% of respondents were “ill at ease in the diagnosis and follow up
of women presenting with endometriosis”. I’m not entirely sure what they
mean by “ill at ease” but it doesn’t sound like a good thing and certainly
doesn’t seem representative of a professional attitude.

According to
this survey half of the doctors surveyed couldn’t name three main symptoms of endometriossis
and only 24% would refer the patient without delay. Unsurprisingly the authors
found that general practitioners were much more likely to give better answers
if they had attended advanced gynaecology courses or followed up more patients
who had been diagnosed with endometriosis. It seems then that if these advanced
gynaecology courses are available to general practitioners, they should be made
mandatory.

So let’s say
you do get referred to a specialist, the next step is getting your condition
confirmed. Traditionally this is done laparoscopically, but an interesting report from the
Netherlands on the development of a new type of diagnostic method for
endometriosis may change that in the future. Whilst the good old fashioned
laparoscopy can’t be beat for accuracy and precision (in the right hands), it
would be nice to have a different method for detecting endometriosis that
didn’t involve having to be knocked out and cut open. Step up then
‘gadofosveset-trisodium enhanced magnetic resonance imaging’, I’ll not go into
the technical details because frankly I don’t know what they are. Basically it is a modification of the MRI
detection system which is a scanning method that allows us to see inside your
body, much like x-rays but without the radiation. The gadofosveset-trisodium is
a chemical that is injected into the body to help the MRI pick up blood vessels
more easily. Importantly though this method makes it easier to distinguish
between older blood vessels and newer blood vessels which the endometriotic
implants would grow to survive. The authors of this study testing the technique
on mice that had been induced to have endometriosis and found that the newer blood
vessels from the endometriotic implants did show up clearly on the MRI scan,
meaning this technique could one day be used for the non-invasive detection of
endometriosis in humans.

Onto medical
treatment now, which is usually the first line approach to endo treatment. The
drugs we have for the treatment of endometriosis are many and varied, some are
quite good, others not so much. But if you’re trying to develop a new drug,
where do you start? In the past scientists would turn to Mother Nature for
inspiration and, although synthetic drugs are fairly dominant today, we still
haven’t lost sight of the old ways. This
is highlighted by two studies which have looked at the potential of compounds
extracted from plants as possible treatments for endometriosis. The first of these studies
found that compounds called Kaempferol and Apigenin, which were extracted from
red clover, showed some positive effects on endometrial cells grown in the lab.
The trouble with this is that endometrial cells grown in the lab are very
different from the cells found in endometriosis, so whether or not these
compounds will have any real benefit remains to be seen.

The second study looked at a
compound you can extract from hops called Xanthohumol. This study was a bit
more in-depth than the first because they induced mice to have endometriosis,
gave some of them the Xanthohumol and then observed what happened. What they
found was that the mice given Xanthohumol had smaller endometriotic implants
and the blood supply feeding the implants was also reduced. These studies are encouraging because it means
people are actively seeking new and better therapies for endometriosis and another
advantage of these compounds is that they are non-steroidal, so should have
much fewer side-effects.

Hops - Source: Wikipedia

Red Clover - Source: Wikipedia

Speaking of
medical treatments, a study
was published recently concerning the effectiveness of a relatively new
endometriosis drug called dienogest
(also marketed as Visanne™). Unlike other drugs which are more commonly used
for other reasons (such as the birth control pill), dienogest was designed
specifically as a treatment for endometriosis. To put dienogest to the test
this study took 252 women with endometriosis and gave 124 of them dienogest and
128 of them leuprolide acetate (also known as Lupron™) over a course of 24
weeks. To assess the effectiveness of each treatment the authors questioned the
women about their endometriosis symptoms and their health overall.

The results
of this study showed that dienogest and leuprolide acetate performed equally as
well at reducing the symptoms of endometriosis; most of the women noticed a
dramatic decrease in pelvic pain, dyspareunia and dysmenorrhoea. However, it was when comparing overall health
that the differences really start to show. The patients who took dienogest had much,
much greater levels of improvement in overall physical and mental health,
indicating that dienogest is much better tolerated and has far fewer negative
side effects. The authors of the study
put this down to the fact that, unlike leuprolide acetate, dienogest doesn’t cause
a huge decrease in estrogen levels which leads to some of the nasty side
effects you can get with leuprolide acetate.

From medical
treatment to surgical treatment. Some of you may have heard about the Da Vinci Robot system that can be
used by surgeons to aid them in performing delicate operations. For those that haven’t
heard about ‘the robot’, it’s basically a remote operated series of robotic
arms (see picture below) that, according to the marketing on their website,
makes minimally invasive surgery quicker, simpler and increases recovery rates.
The trouble is there haven’t been many studies concerning how safe the robot is
in real world use; although that is most likely because the robot hasn’t been
in use for very long so large, long term studies concerning its safety probably
won’t be coming out anytime soon. Nevertheless, a study was published
recently from Taiwan where 60 patients underwent robot-assisted surgery for a
number of different gynaecological conditions (including two resections of deep
pelvic endometriosis). What the surgeons found was that robotic surgery “is feasible and safe for patients with
complicated gynecologic diseases” and “surgeries
were performed smoothly without ureteral, bladder or bowel injury” which is
encouraging. The only problem is these surgeries were performed by specialists
surgeons with a great deal of experience, it would be good to know how less
experienced doctors fair with the robot before coming to any conclusions about
its overall safety.

The Da Vinci Robot System - Source: davincisurgery.com

Lastly, it
turns out endometriosis is not a uniquely human condition. I’ve wrote here
before about endo occurring in non-human primates, but a report from Japan was
the first to find endometriosis developing spontaneously in a female Mandrill.

This is the happiest picture of a Mandrill I could find - Source: Los Angeles Zoo

7 comments:

I don't have access to the full report regarding the Mandrill with endometriosis. How did they know it developed "spontaneously"? Did they follow it over time? And, it would be interesting to see pictures of unhappy Mandrills and Mandrills with endometriosis to compare side-by-side with the happiest Mandrill you have shown here. :) Great reporting, as always.

Haha! Thanks Jen, When they talk about 'spontaneous' endometriosis they are just reffering to endometriosis that was not induced experimentally or on purpose i.e. it was a completely incidental finding. Also I hope robots dont get too good at typing, or else I'm out of a job!

Hello, Matthew! Firstly, I want to thank you for sharing your wisdom as a researcher on endometriosis. I'm a Brazilian journalist who has suffered more than 18 years with the terrible pain of endometriosis, to be diagnosed, at age 31. My endo started my 13 years when my appendix was removed. At 15 I had endometriosis in the ovary. Late diagnosis has left me with a serious consequence: the deep dyspareunia. I had to stop working to treat me, I went into deep depression, and to occupy my mind and help about 10 to 15 million Brazilians who have the disease, I created the blog The Endometriosis and I, two years ago. The blog is a pioneer in the world to report the treatment of a patient with endometriosis and was also the first that made way for other women to tell their stories. Unfortunately, human ignorance about endometriosis recurs throughout the world. I thought it was just a colonized country, like Brazil. But now I'm in touch with the world, I'm horrified by this situation. The worst is that this leads many women to suicide. I am shocked by the amount of money that is spent to treat endometriosis, but no government does nothing. In Brazil, gives me even more ashamed because we are ruled by a woman, that evil must know the disease.Brazil is the country that has women patients worldwide. Pollution, miscegenation, among other factors contributed to it. Thanks to God and my family have good health insurance, but I'm fighting for those who do not have this same opportunity for me. I know Brazil has some of the best medical scientists of the world, and I'm happy to be part of a large research center, UNIFESP, Federal University of Sao Paulo. The clinic of pelvic pain and endometriosis by Unifesp offers a free treatment and have doctors more human that I know, sensitive to our pain, but the bureaucracy for tests and surgeries in the public sector in my country takes 6 months to 1 year. We need to unite in order to change this situation. I'm with you in this fight. On June 1, I'll make my second surgery. The first was in July 2010. I would love to share your articles in my blog. Nice to meet you! This is the link of my blog http://aendometrioseeeu.blogspot.com.br/ I hope you enjoy it! Blessing and wisdom for you to continue helping us! Caroline Salazar

Hi Caroline! Thanks for getting in touch, its great to hear from endo advocates throughout the world and its sounds like you're doing a great job spreading awareness with your blog. Brazil has had a really good research output in the last few years and the 12th World Congress on Endometriosis will be held in Sao Paulo in 2014 which will be a great opportunity for endo experts from all over the world to see what Brazil has to offer (I can highly recommend attending, I went to the one last year in France and learned so much). Feel free to share my articles, I'm going to add your blog to my favorites! I wish you all the very best with your surgery on the 1st June and hope you are pain free soon.

Hi, Matthew, thanks for your attention. All I want is to have my life without pain. But I know I'm in the hands of some of the best specialists in endo in the world. Part of my treatment I do in the UNIFESP, the public clinic at the University of Sao Paulo, which is headed by doctors scientists Dr. Eduardo Schor and Dr. Helio Sato. Do you know them? How to delay surgery and examinations have a long line, the Dr. Sato is a rare expert in my country that attends and operate by my health insurance. As it took me long to discover that was sick, my abdominal organs were all attached and some without their functions. Dr. Sato didn't know how I was still alive and how can I have a child naturally. Just God can explain! From then hugged the cause and want to spread awareness about endo, because I learned a lot with Dr.Schor. I'll open an NGO with a women who has several endometriosis and she's story is very sad with this disease. My country is very largest but just in Sao Paulo have great public'sn clinic skilled in endo. Can you believe it. Everything I know about endo started to learn with dr. Schor. This physician-scientist is fantastic. Every week, he explained to me about the disease, and I couldn't believe it, of course. In fact, one of these Brazilian studies that was presented in France, in 2011, about the late diagnosis in a newspaper of general publication in Sao Paulo, and dr. Schor appointed me to be the character of the publish. Only two months later, in abril 2012, I had the confirmation that I took 18 years to know that something was wrong with my body. And look I'm a privileged person in my country because I had a good study, I studied English when i was a child, so I know today, went to college, but had no knowledge that the colic very strong was something wrong with my body. The gynecologist treated me as polycystic ovary since when I had 15 years old. And I always said: I had a lot of cramps and pains in my legs too much, nausea, dizziness, fainting. All in vain. I just discovered the endometriosis when my ex-boyfriend was working (he's a photographer) in a lecture about endo in 2009. Maybe we will see in 2014, as a journalist, I can get some work there. Thanks for letting me share your articles and add my blog in your favorites. I did the same with yours. When I publish your articles, I'll leave a message for you. Will be very useful to my readers. Kind Regards, Caroline Salazar

Thank you Caroline, Im so sorry to hear you've had such a tough time getting diagnosed, sadly it is a story I have heard from many other women, hopefully with greater awareness and more research the future for women with endometriosis looks bright. I am familiar with Dr Sato's work but I dont know him personally, it looks like you are in good hands though and I hope that you are pain free soon. Best Wishes, Matt

Endometriosis Update

Endometriosis is an enigmatic disease, little is known about its origins, but it affects the lives of millions of women around the world. Despite the apparent lack of advancement in the field of endometriosis research, progress is slowly being made. The problem is that this progress is very rarely reported accurately to the public in a way everyone can understand. This Blog aims to report what is going on in the area of endometriosis research in plain and simple terms, so that everyone can keep up to date. Updates will be pretty sporadic but I'll try to report items of interest as often as possible.